The caregiver burden of idiopathic inflammatory myopathies

This study describes the development of Common Data Elements (CDEs) for myositis—standardized data definitions designed to improve how researchers collect, compare, and share information across studies. Although significant progress has been made in outcome measures for myositis, the field still faces major challenges due to lack of standardization and fragmented datasets. This is particularly important […]

  This study used direct lived-experience data collection, involving 149 Australian IBM patients and carers, defining what matters most to patients and carers.  The study identified 10 key priorities,  with the theme of “Uncertain Future” the highest priority issue.  Both patients and carers reported moderate to low coping scores and paints a striking picture of […]

Pain in Myositis Is Real! The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies”  published in Rheumatology was a groundbreaking moment for the myositis community and MSU ‘Right Now” Research What Was This Study About?This study looked at how common pain is in people living with Myositis, a rare […]

Observational Study on Anti- DMA5 Dermatomyositis (Peer-to-Peer)

This study reviewed the scientific literature to better understand why falls occur in IBM and what muscles groups play the most important role. The work helps guide future research and rehabilitation strategies aimed at reducing falls and improving safety for people living with IBM.   The  findings suggest that rehabilitation programs for IBM may benefit […]